Dyspraxic Journey

Monthly Archive: July 2015

Health Update – Perianal Streptococcal Dermatitis

So, it turns out the red ring around CB’s rectum was not due to a yeast infection. We still believe the infection formed from the chigger bite on CB’s penis. We think he scratched it and got it infected and then passed that infection to his bottom. For the past almost 2 weeks, the ring has been present, his rectum became increasingly itchy, his pee and poop accidents became a daily to 2x a day thing, his diapers were completely full or overflowing at night, and he mentioned having a headache a few times. We took him to urgent care since we are out-of-state right now and had him tested for strep. Yep, that is what he has. It is perianal streptococcal dermatitis. Since CB reacted to amoxicillin with a rash covering his entire body after taking it to treat an ear infection when we was <2, we asked the Dr to prescribe something else. She prescribed him azithromycin. It is day 4 of taking the medication and the ring and itchiness are definitely improving. He also had no accidents today and the slight rash on his bottom that has been present since January seems to be improving. We also got confirmation that HB also has strep and started him on azithromycin, as well. In addition to having the rash after taking amoxicillin, CB also developed a yeast infection. CB is taking probiotics so this should help combat a yeast infection from starting from starting the antibiotics. I have also started giving CB & HB goat’s milk yogurt to just help ensure the yeast infection does not form.  We have introduced dairy on occasion over the last 2-2.5 months. So far, CB hasn’t shown a reaction. The exposure has been very limited though. Hopefully, giving him the yogurt to fight off a potential yeast infection will not backfire and cause another issue.

The other interesting thing is that we were trying to get a comprehensive parasitology x3 stool test from CB to send to the lab to determine yeast, parasite, and bacteria levels within CB’s gut. We requested this test before this whole thing started. Oh well, we will wait till CB’s system is better and then take the stool test and finally complete the OAT (organic acids test) urine test. The lab is sending us some urine bags so we can collect the urine samples during the night while CB has a diaper on. It has been impossible to get CB to pee first thing in the morning, which is the requirement for the OAT test.

July 30, 2015 Allergy, Diet, & Supplements, Tests & Evaluations, , , , 0 Read more >

Dyspraxic/Apraxic Inconsistencies

One of the common characteristics of someone with Dyspraxia/Apraxia is the continual inconsistencies that exist in many to most parts of their lives. With CB, this is not only apparent with his speech production, but his word retrieval, short & long term memory, processing speed, fine & gross motor skills, tracking speed, ability to sense the need to pee prior to actually peeing, and other areas. When all cylinders are firing and CB is on the top of his game, many people might not even notice CB’s differences, other than his limited speech. When things are off, then everything is just plain hard for CB, all the wrong words come out, getting his body to move in the desired way is quite difficult, CB will get stuck in repetitive patterns (like just saying “No” over and over and over.) and CB will even be very reluctant to do things he has “mostly mastered” in the past. For most days, CB has many struggles and the easiest thing can seem so hard for him. For example, CB has been putting his own underwear on for 7 months and still asks us to help on most days.

I have some tendencies on the dyspraxic side including issues with word retrieval, processing information at a slower pace, walking into things, tripping over nothing, and performing tasks at a slower pace. When I am tired or stressed, it is basically impossible for me to say every word in every sentence correct. I will just skip over the word I can’t think of or get stuck where I just say the wrong word each time even after being corrected a time or two. I feel that it is almost impossible for me to speak 100% correct at those times and just hope for understanding from those around me. Now I am just trying to imagine what it would be like if this feeling of impossibility existed within me for everyday tasks on a consistent basis. What would others feel towards me? How would I feel about myself? How would I feel about trying new things? Would I feel that people feel sorry for me? Would I feel less than others? I think I need to remind myself of this often when I am not being as understanding as I should with CB. I also need to continually ask “What would help me to feel more positive about myself?” and to try to always find ways to help CB in this area.

For CB, one interesting change is that his vowel sounds have been quite consistent for the past 6 months or so. This same issue still exists for some consonant sounds, but it seems like the more he practices the more consistent he is becoming with his consonant sounds, as well. It is interesting b/c I am wondering how does something move from the inconsistent to the consistent and stay consistent for the dyspraxic person? Does enough practice make the neural pathways for certain sounds, movements, words, etc. so defined that they become a consistent part of the dyspraxic’s mastered capabilities? Can I hope that CB will not always struggle with so many parts of his life? I know it is realistic for him to be able to perform many everyday tasks without thought, but will most things actually become “easy” for him? Will he always struggle with certain fine motor tasks like writing or being able to follow the lesson in class or easily communicating to even his closest friends or physically keeping up with his friends?

So I am currently struggling with the knowledge that CB needs PRACTICE, PRACTICE, PRACTICE and with the knowledge that CB also still just needs to be a kid. How do you ensure to get enough of everything in but always still allow for CB to have his childhood? I know I am not doing enough at home right now, especially since it is summer. However, I hope to create more of a balance. I need more strategies for having play actually be PRACTICE, PRACTICE, PRACTICE but hidden so CB is not aware. My next steps are to get more iPad apps that are targeted towards speech production and concepts that CB needs to work on. So, I know I don’t have the answers, but asking these questions helps put me on the path to getting the info I need to take the next step.

Side Note about Health: CB has what I think is a yeast infection. He got a chigger bite (at least this is what we think) on his penis. About a week later, he developed the ring around his anus. In the past, this ring has indicated a yeast infection. I have been treating the yeast infection for the last 5 days with no progress. I have treated it with coconut oil, some Eden’s salve, and applied some hydrocortisone to help with the itching. Hopefully, we will see some progress or I will have to take him in to the Dr. We are out of state right now, so I have been hesitant.

July 23, 2015 Growth and Progress, , 0 Read more >

Preschool Update

Just when I think we have settled on something, I start questioning things again. Olem and I toured another preschool about 25 minutes away from the house. This preschool caters to developmentally typical kids and to kids with special needs. I didn’t expect to love it. I thought “I have heard good things about this school but it is quite far away. Olem and I have to love this school b/c it is quite a drive.” To my surprise, we both love it for so many reasons. The biggies are 1) Olem & I feel we can be actively involved in CB’s education, 2) They provide flexible scheduling so CB can attend 4 days and be off on Fridays. Olem & I also determine how many and what hours CB attends, 3) They track each of CB’s skills and chart/monitor them regularly so we will have a much better idea of CB’s progress and current skills, 4) They incorporate more outside playtime and prioritize it, 5) They are reasonably priced, 6) The classes are a mix of boys and girls, 7) The primary teacher has so much energy and exudes positivity, 8) Parents can drop-in and observe anytime, 9) CB interacted well with the other kids and very well with the teacher during his first trial day, 10) The teacher has time built in to work with kids 1-on-1 to work on skills were they need extra guidance, and 11) The teachers are trained in ABA therapy and know how to positively change behavior. (We hope this will help CB with his confidence and perspective. He currently tells us about the negative things that happen at school. We hope he will start telling us more about the positive things that happen. If his focus does not change, maybe the ABA trained teacher can help us understand why he focuses on these things :).)

Unless something changes, CB will not attend PPCD next school year and will attend Petunia Preschool instead.

July 2, 2015 Education, 0 Read more >

Therapy Evaluations & Fish Oil Dosage Change

This week was packed with evaluations of CB’s progress in speech and physical therapy. He had 3 different ST evaluation reports completed and 1 physical therapy report. The great news is that he has made huge leaps with his expressive language and only falls a few months behind. This test focused on CB’s comprehension of the questions asked and CB being able to verbally express his comprehension. For most questions, it didn’t matter if he replied with 1-2 word answers and his ST allowed for extra time, minimal guidance, and some substitutions due to his apraxia. He is still about 5-6 months delayed on receptive language skills. The third test was an articulation test and it placed CB at just under 2 years behind. The good news is that this was the first time the test could have even been given. 6 months ago he could not have made it through the test or been able to accurately try to make each sound. His ST also said that he made developmentally correct errors. Basically, that even though he is quite behind, the errors are the expected errors and sound substitutions given his current sound repertoire.

I should step back and mention that the first test administered was the articulation test. Even though I was glad his ST was able to administer the test, hearing the results caused me to feel extremely weighted down, unsure, and like I had a hole in my core.  All the worries started surfacing, “Will my son always be behind?”, “Is he gradually getting further and further behind?”, “Even though he seems to be responding really well to his ST, are we going to have to make changes?”, “If we have to make therapy changes, what are they?”, “Is all this therapy not helping him?”, “Am I failing him?”, “Is that first no tact, seemingly uncaring caregiver right that CB will always be behind and we are not providing enough for him?”, “This feeling hurts so bad and I feel so lost. What do I do?”… Olem and I had to go through some stuff and fortunately vocalized our worries late one night to each other. I think we both felt light again and more like ourselves. We felt like no matter what, we can handle this. Fortunately, we got the results of the other 2 ST tests today and I feel like I am floating on air. I feel hopeful!!!!

For CB’s physical therapy evaluation, he showed some improvement with some of his retained primitive reflexes (like the moro reflex) but started showing signs of retained primitive reflexes that did not seem present prior (like the fear paralysis reflex). CB’s connection with his current PT is just so-so. It is super convenient though b/c she comes to our house for the therapy and she is one of the limited few in our area with experience working with retained primitive reflexes. If we drop a therapy, I think it will be this one. Working with the retained primitive reflexes can be so beneficial though for a kiddo with Dyspraxia.

We lowered CB’s fish oil dosage about a month ago, and upped it back up last week. Just like the past, CB went CRAZY for the several days following the dosage change. Basically, CB would fixate on something and could not let it go. Primarily, it was related to sharing and stealing other kiddo’s toys. He would then scream, kick, hit, and throw a huge tantrum every time he wanted something he could not have. Last Sunday, HB had his first play date at our house with just one of his friends and his parents. In the 3 hours they were at our house, CB threw at least 6-7 kicking/screaming tantrums. Almost all if not all were around HB’s friend having a toy and CB deciding he wanted it. It was soooo hard. At the pool a few days prior, CB had a full-blown tantrum. When CB acts like this, I feel like everyone is judging me. I feel like the other parents think I am a bad parent, my child is totally spoiled, I can’t handle my child, and sometimes look at my child wondering what is wrong with him. I HATE this feeling. I HATE those glances and seeing those seemingly judging faces. During those moments, I wish I had special powers to hide CB and I in a force-field protective bubble. In this bubble, no one can see or hear us, and we can just be ourselves.

Fortunately, I think CB is now on the other side and is now showing the positive effects of the fish oil change. Today, CB seemed to be expressing himself very well. He also seemed more cuddly and mentally quick. He loves watching Daniel Tiger and he even responded to several of the questions in the Daniel Tiger show this afternoon. HB will regularly respond, but CB typically just watches. Before watching Daniel Tiger, we played with play doh and pretend for about 30 minutes. All of this was dictated by CB. CB pretended the house was on fire and we had to save his bears in the living room and then we had to save the cars and other things around the house :). He then proceeded to be a police office and a cowboy. HB remained super HB and helped the entire time. Working through the retained reflexes exercises today was even easy.

Side Note: HB has been in summer language camp for the last 3.5 weeks. He seems to be enjoying it. It was around the same time that he started having more accidents. He has been having 1-2 accidents every day to every other day lately. Sometimes, the teacher or I have showed him that he had an accident. He did not mention it to us.

July 2, 2015 Allergy, Diet, & Supplements, Therapy, 0 Read more >